Hearing-impaired boy helps others

KIRKWOOD, Mo. — David Cluff's parents had a choice 12 years ago: spend $50,000 to save their son's hearing, or watch their son withdraw.

"Parts of him seemed to die," said Floris Cluff of Pacific, David's mother.

The family lived in Salt Lake City when they suspected he had some sort of developmental problem as a toddler. "We were concerned because he wouldn't talk."

David, now 18, says he was born with cytomegalovirus, which is a common infection, according to the National Institutes of Health. In some infants and people with compromised immune systems, it can affect hearing, sight or other parts of the nervous system, says the National Institutes of Deafness and Hearing Disorders.

But it was David's peculiar habits that caught their attention.

"He was reading lips when he was 3 years old. He'd taught himself to read lips," Floris Cluff said.

A speech therapist suggested David get a hearing test because his speech was fine. He got a hearing aid and it worked for three years.

Still, his hearing loss continued to age 6. And as his hearing went away, so did David. "He stopped talking or playing with his cousin. He'd just stay in his room, and that wasn't like him," Floris Cluff said. "We learned signing, but that wasn't enough."

They were still living in Salt Lake City when doctors restored David's hearing with a cochlear implant.

"It bypasses the (damaged) part of the ear," said Jamie Cadieux, a pediatric audiologist at St. Louis Children's Hospital. She has worked with David since 2006, a year before his second implant.

While hearing aids amplify sounds, an implant is for people with permanent hearing loss, Cadieux said.

She explained the device is made of two segments, one inside the scalp and one removable piece on the outside.

The implant is placed under the scalp near the ear. It's wired to transmit signals around the damaged nerve.

The outside segment is a microphone that magnetically connects to the implant in his scalp. So David can place or remove it.

His father, Tyler Cluff, says that beyond the technology, the real miracle came when friends and family began holding fundraisers — unasked. The family wasn't wealthy and had no health insurance. Their community of friends, family and neighbors wasn't wealthy, either. But as a village, they nickel-and-dimed the debt for years.

"We'd find small bundles of money in the door some mornings," Floris Cluff said.

Some years later, the family moved to St. Louis, where Tyler Cluff found work that had health insurance.

And unexpectedly, the Utah hospital forgave about half their debt. "They said we'd struggled for so long to pay it off, forget the rest," Floris Cluff said. "It was another miracle."

Until this time, Floris Cluff, an elementary school teacher, had home-schooled David.

"He needed one-on-one attention, and that was the only way we could afford it," she said. His siblings, two brothers, now 16 and 13, and younger sister, now 10, chose to be home-schooled, too.

When he reached high school, David chose an Internet-based, distance education program at Liahona Preparatory Academy, a private high school near Salt Lake City. It's designed for children who have been home-schooled. The choice was for religious and academic reasons, Floris Cluff said.

At age 14, David got his second cochlear implant at St. Louis Children's Hospital.

"Hearing out of two ears is better than one," Cadieux said. "One is enough for spoken language, but it doesn't allow you to localize sound and focus on sounds; it's difficult to detect locations, especially with background noise.

"That can mean more social isolation."

An implant isn't the quality of normal hearing, Cadieux said, although companies are developing better devices. So two devices were needed for David to compete academically.

Cadieux said part of her job is counseling young people about coping with life with implants. Young people can develop problems with self-esteem, confidence and withdrawal, she said.

That wasn't David.

While he wears a headset that looks like hi-tech earbuds, he doesn't consider them an impediment. "They're a blessing; I'm able to do what I'm supposed to be doing," he said.

Since the second implant:

He became an Eagle Scout.

He graduated high school with honors.

He became an avid writer, starting with poetry, then his own biography.

For his Eagle Scout project he created DeafTeens.org, a blog and forum.